Phone call w/ Stem Cell Trial- Preclinical- 10 PWP ASAP. Participate in the preclinical to be first to have chance at phase 1 clinical.

massgeneral.org/neurosurger...

I just spoke with Mass General. Talking again next week to someone else. Today I was assessed for eligibility for their pre-clinical stem cell trial. I am not eligible bc my PD is not advanced enough. They are looking for 10 PWP as soon as possible. Phase 1 clinical to follow in a couple years. Those who participate in the pre-clinical will have the greatest chance of being in the next phase. This was already done through every phase in a retired doctor named George Lopez. Follow the link and on the right side there is a button to email them. State your interest and that you are able to come to the hospital once a year for a couple years and that you are responsive to Levodopa.

[Jana86]

Thank you for sharing Very helpful information.

[Hidden]

This is great news CC!!! Hopefully this becomes a regular offering to pwp before we become totally incapacitated.

[Farooqji]

Thanks for sharing. I consider it a better opportunity than FUS trial

[Cons10s in reply to Farooqji]

Farooqji, why do you consider it a better trial opportunity?

[Parkinsonjisung]

How do clinical trials expect to get participation without marketing/advertising? I know foxfinder was supposed to tackle this but I feel like it's failed. In this day and age, trial should have queues of ppl waiting to participate. Hidden , I know you're eager to improve the situation. Maybe thats an area worth investigating.

[jimcaster in reply to Parkinsonjisung]

Maybe this forum should/could include a function which provides a link to all Parkinson’s trials seeking volunteers...

[Hidden in reply to jimcaster]

Yes! Excellend idea.

[MissRita in reply to jimcaster]

Yasssss

[Parkinsonjisung]

Is anyone aware to any other alternative to foxfinder? Foxfinder is just a poor implementation of a good idea. Has anyone attempted to do their own version?

[Hidden in reply to Parkinsonjisung]

I want to but if someone else would do it that would be excellent! If you do it, I will help you if you want. Just tell me what you want me to do and if I am capable of it, I will do it. We need it!

[Parkinsonjisung in reply to Hidden]

I haven't really looked into it. I just know that foxfinder isn't what I'd personally like to see in a trial finding site. We could just go to them but they're never gonna change it. The overheads for them would be big. I don't know if someone has came up with an alternative. Investigating that would be the 1st step. I might spend some time next week seeing how feasible it'd be and if we could actually make something better.

[Hidden in reply to Parkinsonjisung]

I think the easiest way with zero funds would be to start a PD Trial Finder facebook group and update with trial status'. There are a lot of PD facebook groups on which we could notify of status changes with a link to the PD Trial Finder facebook group. What is your opinion of that idea? I like cost free, visibility, and ease. I have not done it bc I am still a newby learning the ropes of how trials work and PD in general.

[Parkinsonjisung in reply to Hidden]

No, if I was gonna do it, I'd do it right. I'm a software engineer so making the site wouldn't be an issue. Foxfinder is fine but it could be so much better. Personally I don't think Facebook approach would solve the problem which I think exists. However don't let me put you off doing thst approach. 😆

[Hidden in reply to Parkinsonjisung]

I didn't know you are an engineer. Had I known I would never have suggested facebook! FB was my maybe better than nothing approach but a website is what is needed! And, you could have advertisers to make it more worth your while if you wanted to. What can I or we as a group do to best support you in this?

[Parkinsonjisung in reply to Hidden]

Let me spend some time during the week n I'll do some research to see what's feasible and to understand why other ppl haven't done it n what foxfinder is missing. Ill message you 1:1 as I doubt ppl wanna keep reading this 😅

[MissRita in reply to Hidden]

I’ll join!

[Hidden]

More info about the trial: You only have to go there a couple of times, two times in two years I believe. It is in Boston.

[kind2animals]

I sent an email communicating my interest in participating in the pre-clinical and hopefully the trial itself. Only sent it out on Sunday. No response yet.

[pdkid in reply to kind2animals]

what about now? three weeks later... any response?!

[Hidden in reply to pdkid]

I received a prompt response and subsequent phone call. If I was on CL I would definitely do it. They are only making the pluripotent cells. No implantation yet

[pdkid in reply to Hidden]

hmmm, interesting. I guess by now they have all their subjects...

[Hidden in reply to pdkid]

When I spoke with them they definitely did not

[kind2animals in reply to pdkid]

Sorry about the delay. I did receive a response about one week or a week and a half after I sent in my information to expressed my interest in participating in the trial. They said they would keep my information but they weren’t taking people from outside of the Boston area. I’m about 1000 miles outside of the Boston area, so that leaves me out.

[pdkid in reply to kind2animals]

gotcha, thanks for sharing

⭐

[Jana86]

I emailed and heard nothing. I live in Maine...about two hours from Boston. Wish they would be clearer about geography and not waste our time. That, or write back!

[Hidden in reply to Jana86]

How long ago did you email? Perhaps calling the number listed with the email would be better. 617-749-2551

2 hours from Boston is very reasonable. I am in Northern NJ.

[hanifag]

Dbs do I qualify

[Hidden]

youtu.be/cN2ZgSStm7I(Not working as expected?)

[Hidden in reply to Hidden]

I am the “hidden” that posted it a year ago. It’s nice to have someone interested.

[Hidden]

After some frustrating delays with the clinical trial. Doc and Kwang-Soo have fixed some minor hiccups and are about 4 months away from beginning(again) the clinical trial. They are incredibly frustrated with how long the “process” takes- but will continue to fight. I’ll post again as soon as we get the final go ahead from the FDA.

instagram.com/p/ChtFeSLMYQ7/

[rancsikanna]

Hi have you been finally involved in phase 1 trial?